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    » 7 months since the diagnosis
    Getting to the point of wanting to End Everything ADVICE NEEDED EmptyWed Aug 14, 2019 2:38 am by agtoronto

    » Gabapentin Gel. or other topical creams
    Getting to the point of wanting to End Everything ADVICE NEEDED EmptySat Jun 15, 2019 5:22 pm by mary jane

    » IMPORTANT FOR UK SUFFERERS
    Getting to the point of wanting to End Everything ADVICE NEEDED EmptySat Jun 15, 2019 5:21 pm by mary jane

    » Help New Diagnosis
    Getting to the point of wanting to End Everything ADVICE NEEDED EmptySat Jun 15, 2019 5:07 pm by mary jane

    » 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
    Getting to the point of wanting to End Everything ADVICE NEEDED EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

    » Vestibulectomy next week in London!! - questions!!
    Getting to the point of wanting to End Everything ADVICE NEEDED EmptyWed Apr 24, 2019 8:32 pm by HedvigB

    » Dating with Vulvodynia and Vaginismus advice
    Getting to the point of wanting to End Everything ADVICE NEEDED EmptyFri Apr 19, 2019 10:25 pm by Tartufo

    » Research Participants Needed!
    Getting to the point of wanting to End Everything ADVICE NEEDED EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

    » Does anyone else have Endometriosis?
    Getting to the point of wanting to End Everything ADVICE NEEDED EmptyMon Apr 08, 2019 7:54 am by Jo44

    Gabapentin Gel. or other topical creams

    Thu May 10, 2018 9:43 am by Rosie21

    Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

    Comments: 2

    Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

    Sat Aug 01, 2015 4:17 pm by Fielder

    Hi everyone,

    I'm a newbie.  I live in the UK.  

    I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

    I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

    Comments: 11

    An absolute success story- please read!

    Fri Mar 08, 2019 10:57 pm by Persevere1990

    Dear All,

    I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

    I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

    Comments: 0

    I'm sorry im rambling

    Thu Feb 21, 2019 5:49 am by Jet227

    hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

    Comments: 1

    New member need advice please

    Thu Feb 28, 2019 11:33 pm by PANDORA123

    Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

    Thanks

    Comments: 5

    MonaLisa Touch

    Fri Feb 08, 2019 7:35 pm by rl2091

    Hi All,

    I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

    Comments: 3

    Diagnosed Recently

    Tue Jan 08, 2019 3:55 pm by flissyg

    Hi All,

    I’m so glad I’ve found a place where there are others who understand how I feel!

    So this is my story:-

    I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

    Comments: 4

    New and need advice and help

    Wed Dec 05, 2018 3:26 pm by Cin124

    Hi everyone,

    About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

    Comments: 6

    New here would very much appreciate advice at the end of my rope

    Wed Jan 09, 2019 9:09 pm by Jma990o

    This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
    So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

    Comments: 3


    Getting to the point of wanting to End Everything ADVICE NEEDED

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    Getting to the point of wanting to End Everything ADVICE NEEDED Empty Getting to the point of wanting to End Everything ADVICE NEEDED

    Post  SoHelpless on Mon May 14, 2018 10:39 am


    Good morning everyone.

    I am at my ends here, from suffering with a unknown pain for the last five years of my life it's really taken a toll on my mental health. So finally I've got enough courage to ask for advice here.

    I am currently 19 years ago and five years ago I suffered from a chronic vulvar pain, usually sprouting from sitting down in school all day in those horrible hard chairs. I suffered in silence for the most part eventually bringing up the courage to go for a physical exam only to be told that IM FINE?! I for one do not like this as I want there to be something you know? I want to be diagnosed and given medication so I can live my life again. Then at last 3 years into this I felt free, I was pain free! But to no surprise I got a urine infection and after that well it came back. full force, went to the doctors again telling me nothing was wrong no infections yet she even stated I looked inflamed down there. my mother is no help bless her she simply cant understand and she thinks that I am doing it to myself by thinking there is pain there when there isn't but I just know there is. I can understand that my brain my make the symptoms a thousand times worse but it's still there. Please ladies, people on here who have suffered help me identify what it is I have and how I can manage it so I can live my life again.

    My symptoms are this:

    Burning towards end of urination
    I have noticed that during the end of urination I feel almost crampy and get a horrible tightness
    Inflammation from sitting all day (I have no choice this is my work)
    Sex is painful (most of the time)

    Please understand that this is no infection I have had several tests done, nothing has been found. Why am I feeling like this?? is this a type of vulvodynia?

    The pain isn't agonising but it is enough to constantly be on my mind. I cant speak to anyone about it IRL


    Thank you

    SoHelpless

    Posts : 10
    Join date : 2015-08-15

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    Getting to the point of wanting to End Everything ADVICE NEEDED Empty Re: Getting to the point of wanting to End Everything ADVICE NEEDED

    Post  fairlight10 on Mon May 14, 2018 6:49 pm

    Hi Sohelpless. It sounds all too familiar. I also have vulvodynia, vulvar vestibulitis to be precise. I was also very red in that area. Numerous doctors told me I had thrush, UTI, atrophic vaginitis.The medications I was prescribed just made it worse. Saw a gynaecologist privately and within ten minutes he diagnosed vulvodynia. Saw him again on the NHS where I had a hysterscopy ,removal of lost Morena coil and vulvarscopy. He then diagnosed vulvar vestibulitis. I was prescribed 20 mgs Nortriptyline which I still take every bedtime for the last 6 years. This gave me the relief that I needed to get my life back. I can now sit on a chair. I have a cushion with a hole in the middle for when I drive my car. I had 20 sessions of acupuncture which helped with the emotional stress that this condition can cause. Stress makes this condition worse, getting upset and being unwell. Keep drinking water to take the sting out of your urine. Acidic foods and drinks will cause your urine to burn when you urinate. Check out UK vulvar pain society. They have useful information on their website. Show this reply to your mum, she may start to understand that this is not your fault and is actually not that uncommon. It's just people don't want to talk about it. Some doctors don't even know of the condition. Go back to your doctor and tell her this is what you believe you have. She may try you on tricyclic antidepressants used in their low dosage they are effective for pain relief. She can try you on some topical cream. Ask to see another doctor if she is unable to help. I wish you luck and keep in touch with your progress

    fairlight10

    Posts : 72
    Join date : 2016-04-17

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    Getting to the point of wanting to End Everything ADVICE NEEDED Empty Re: Getting to the point of wanting to End Everything ADVICE NEEDED

    Post  jungleclover on Mon Jun 04, 2018 10:38 pm

    Hello,

    I am 23 and had symptoms that started when I was your age. Today I am symptom-free and have sex normally. My issue was the result of a semen allergy and infection after infection due to the fact that no one knew I was allergic.

    As a result of my experience, I will be applying to physical therapy school where I intend to specialize in women's health. Right now I work as an aide in a physical therapy clinic that does women's health and to me, it sounds like you could really benefit from a trip to a women's health physical therapist. My recommendation would be to try to get in with the vulvular specialist from the gynecology unit of your healthcare provider. They will have a ton of useful resources for you and hopefully have a better idea of what's going on. At this appointment, it may benefit you to discuss the possibility of women's health PT or possibly an antidepressant like gabapentin to quiet down those pesky nerves. I'm sure your MD will have some ideas as to what could help you. Because I'm only an aide I don't have a ton of insight into what's going on with you but I know that pt is helpful for reducing overactive nerves, helping muscles to relax, and returning to normal functionality.

    Reading your message reminds me of when I was your age and had no idea what was wrong with me. It is such a terrible feeling and it is so difficult to navigate medical institutions and get the help you need. I am wishing you all the best. I believe you that it is painful and as someone who works with women with vulvodynia vaginismus and the like I can tell you that you shouldn't feel that way and you shouldn't have to live that way. You will get better!

    -Aleah

    jungleclover

    Posts : 14
    Join date : 2017-07-19

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    Post  sarisbaris on Tue Jun 05, 2018 2:44 am

    I'm so sorry for you suffering. I battled V for 15 years and it was a nightmare. I'm healed now. My heart always hurts reading these posts Sad I healed myself using fruits/vegetables as medicine and some herbs/supplements.

    I followed the protocol by Anthony William. According to him, pelvic inflammation is caused by an unknown/currently undetectable strain of strep. This strain also causes UTIs. So I'm guessing your battling strep. Although, I would do one protocol for herbs for the strep and another for the pelvic inflammation. It's also going to require you remove the foods that feed these viruses.

    Here's my blog:
    http://myvulvodyniacure.blogspot.com/2018/05/basics.html

    I have noticed most of the women I talk to with V also have UTI issues, so I added a UTI section:
    http://myvulvodyniacure.blogspot.com/2016/12/if-you-are-in-pain.html

    Please don't give up! Just keep trying stuff.

    sarisbaris

    Posts : 69
    Join date : 2014-02-17

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